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Coming Together to Find a Cure

Frequent Questions

Will I get paid to participate in ALS CORE?

We cannot pay you for participating in ALS CORE. However, at some future date, you could be paid if you are invited to join a research study.

Will I receive new treatments?

We hope the data we collect will lead to more effective treatments, including treatments designed to prevent or improve nerve damage. As new treatments develop, your doctor, therapist, or other clinician will be able to determine if they are appropriate for you.

Can I refer others to ALS CORE?

Yes. Please tell friends and family members who suffer from ALS about ALS CORE. Our goal is to bring together more than 2,000 people so that we can transform the way we understand and treat ALS.

Can I participate in ALS CORE if I am asymptomatic?

Absolutely. We want to get a real cross section of our community. If you carry the gene defect responsible for ALS, we invite you to join ALS CORE—whether you receive traditional treatments, alternative therapies, or no treatment at all. We also encourage people without ALS or an ALS-associated gene to participate as controls in our studies.

What do I have to do to join ALS CORE?

Joining ALS CORE is easy. All you have to do is sign up with your email address.

Why do I have to give you my email address?

We ask for your email address the first time you log in to ALS CORE so we can be sure that you are a real person rather than a computer or someone using a made-up name.  When we receive your email address, we will email you a personalized link to the registration page so you can register as a member.

How will the information I give you be used?

The information that you give us is to help us better understand your experience of living with ALS so that we can identify and develop better treatments for this condition.

Who will see the information I give you?

You are the only person who will see your information and know that it is yours. Researchers and clinicians may see your information, but they will only know that it is associated with a certain unique identifier or a string of letters and numbers.

How can I be sure that unauthorized people won’t be able to see my information?

All information you share with us will be securely stored in a database behind Massachusetts General Hospital’s firewall.  All systems are regularly scanned and monitored to prevent unauthorized access.

How can I be sure that my information will be kept private?

We take your privacy very seriously. When you join ALS CORE, you will be asked to generate a coded identifying number (Global Unique Patient Identifier, or NeuroGUID). Any information you share with us will be associated with this NeuroGUID. Your name will not be stored anywhere, and your NeuroGUID cannot be linked to you. Although this system cannot guarantee anonymity, it will make it very difficult for anyone to connect your name to anything you choose to tell us about yourself.

I don’t like research studies and don’t want to be part of one. Why should I join?

ALS CORE is not an ordinary research study- it is a network of people with ALS, ALS gene carriers without symptoms, and people without ALS or a causative gene. This network is committed to learning more about the disease, finding better treatments, and ultimately a cure. While there will be opportunities to join research studies, there is absolutely no requirement that you do so.

What is a NeuroGUID?

Our world is numbered. Books have ISBNs and products have barcodes. Cars have VIN’s even people have social security numbers. Numbers help us reference items unambiguously. “John Smith” may be many people, but Social Security Number 123-45-6789 refers to one person exactly. A NeuroGUID (globally unique identifier) is a version of this type of ID number.

Your NeuroGUID is created on a secure website by a specialized computer program that uses 12 pieces of information about you (e.g., first and last name, gender, birthday). The website and computer program used to create the NeuroGUID do not store these pieces of personal information, but if the same information is entered again in the future, the program will return the same NeuroGUID every time. Once generated, this NeuroGUID will be used to uniquely identify you. This is how data from this study might be linked to data from another study you participate in that uses the NeuroGUID. The NeuroGUID and any identifiable information will be removed from your record before your data are shared.

I am worried about my privacy. Can this NeuroGUID be used maliciously to learn personal details about me or other members of my family?

The NeuroGUID is simply a means of identifying the data related to an individual. The system does not store any personal information you enter.

Why do we use the NeuroGUID?

The NeuroGUID, by virtue of being a unique identifier, ensures that each person’s information is only captured and counted once. It also allows you to modify or add information over time without causing any redundancy or confusion. You may be asked to join ALS CORE by your doctor, your Facebook friend, or another family member. The NeuroGUID system ensures that there is no duplication. Otherwise this could distort data and we could draw inaccurate conclusions about ALS.

It sounds like a good and secure idea, but I am still not so sure. Who can I talk to who either can answer my questions or has a NeuroGUID themselves?

Please contact a member of the research team

For a technical description of ALS CORE’s privacy and security system, please click here.